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Meanings of Feeling Well for WomenWith FibromyalgiaPäivi Juuso a , Lisa Skär a , Malin Olsson a & Siv Söderberg aa Division of Nursing, Department of Health Science , LuleåUniversity of Technology , Luleå , SwedenAccepted author version posted online: 08 Nov 2012.Publishedonline: 26 Mar 2013.

To cite this article: Päivi Juuso , Lisa Skär , Malin Olsson & Siv Söderberg (2013) Meanings of FeelingWell for Women With Fibromyalgia, Health Care for Women International, 34:8, 694-706, DOI:10.1080/07399332.2012.736573

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Health Care for Women International, 34:694–706, 2013Copyright © Taylor & Francis Group, LLCISSN: 0739-9332 print / 1096-4665 onlineDOI: 10.1080/07399332.2012.736573

Meanings of Feeling Well for Women WithFibromyalgia

PAIVI JUUSO, LISA SKAR, MALIN OLSSON, and SIV SODERBERGDivision of Nursing, Department of Health Science, Lulea University of Technology,

Lulea, Sweden

The researchers’ focus in this study was to elucidate mean-ings of feeling well for women with fibromyalgia (FM). We ob-tained narrative interviews with 13 women with FM and used aphenomenological-hermeneutic interpretation to analyze the inter-view texts. Our interpretation of the findings shows that for womenwith FM meanings of feeling well can be understood as havingstrength to be involved. The women’s experiences of feeling wellmeant being in control, having power, finding one’s own pace,and experiencing feelings of belonging.

As part of a qualitative inquiry about women’s experiences of living withfibromyalgia (FM), the researchers’ focuses in this study were on meaningsof feeling well for women with (FM). Jumisko, Lexell, and Soderberg (2009)and Olsson, Skar, and Soderberg (2010) have shown in their studies thatpeople can experience well-being despite living with a chronic illness. Illnessentails a loss of the familiar world and the taken-for-grantedness of everydaylife can be disrupted (Toombs, 1993). The ill person struggles to regain asense of control and balance in their everyday life, and they strive to findmeaning despite illness (Corbin & Strauss, 1987). According to Morse (1997),the person uses self-comforting strategies to be able to preserve the integrityof the self. Healey-Ogden and Austin (2011) showed that it is possible toexperience well-being when the person becomes open and embraces thepresent moment and connection to life.

Received 9 November 2011; accepted 1 October 2012.This research was funded by the Department of Health Science, Lulea University of

Technology, and by The Swedish Rheumatism Association (Stig Thunes fond). We thank thewomen who volunteered to participate in the study.

Address correspondence to Paivi Juuso, Division of Nursing, Department of HealthScience, Lulea University of Technology, SE-97187 Lulea, Sweden. E-mail: Paivi.Juuso@ltu.se

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Meanings of Feeling Well for Women With Fibromyalgia 695

Fibromyalgia (FM) is a chronic pain syndrome that has a great impacton everyday life (e.g., Arnold et al., 2008; Cudney, Butler, Weinert, &Sullivan, 2002; Henriksson, 1995a, 1995b; Lempp, Hatch, Carville, & Choy,2009; Raheim & Haland, 2006; Schaefer, 2005; Soderberg & Lundman, 2001;Soderberg, Lundman, & Norberg, 1999; 2002; Soderberg & Norberg, 1995).The syndrome can affect anyone at any age and in any social or ethnic group,but is most common in middle-aged women. Longstanding, widespread paincharacterizes the syndrome (Bennett et al., 2010), but other symptoms suchas fatigue, poor sleep, stiffness, headache, and perceived weakness havealso been reported (Bennett, Jones, Turk, Russell, & Matallana, 2007; Mease,2005). The prevalence of FM in the general population is about 2% (Saxena& Solitar, 2010). As the aetiology of FM is unclear, the diagnosis is based oncriteria (Wolfe et al., 1990). Even though the understanding and acceptanceof FM have increased over time, it is hard to legitimize the illness experienceof FM (Madden & Sim, 2006; Rodham, Rance, & Blake, 2010; Undeland &Malterud, 2007). Living with an undiagnosed condition such as FM meansliving in uncertainty and not being seen as a credible person (Åsbring &Narvanen, 2002; Soderberg et al., 1999). Being met with disbelief and notbeing seen as credible harms a person’s dignity (Soderberg et al., 1999).

Women with FM have a lower quality of life than people livingwith other chronic illnesses (Arnold et al., 2008; Burckhardt, Archenholtz,Mannerkorpi, & Bjelle, 1993; Burckhardt, Clark, O′Reilly, & Bennett, 1997).Soderberg, Lundman, and Norberg (1997) found that the women with FMwith a lower sense of coherence experienced less well-being. Interventionssuch as education and information about FM (Peterson, 2007) and multidis-ciplinary programs (Huynh, Yanni, & Morgan, 2008; Paiva & Jones, 2010;van Wilgen, Bloten, & Oeseburg, 2007) have been suggested as a way toimprove the day-to-day functioning and well-being for people with FM.According to Sallinen, Kukkarainen, and Peltokallio (2011) women with FMbelieved peer support strengthened their ability to manage the illness.

Women with FM have described disruption and changes in everydaylife (Soderberg, 1999) and according to Hallberg and Bergman (2011) themain concern for women with FM is their struggle to achieve a balance ineveryday life. Several authors (Åsbring & Narvanen, 2004; Cudney et al., 2002;Hallberg & Bergman, 2011, Kengen Traska, Rutledge, Mouttappa, Weiss, &Aquino, 2011; Lofgren, Ekholm, & Ohman, 2006; Schaefer 2005; Soderberg& Lundman, 2001) have in their studies shown that women with FM usevarious strategies to cope with their illness. Positive thinking and distractionare commonly used strategies, but sometimes women chose to transcendthe illness and engage in things they experience as joyful despite increasedpain afterward (Juuso, Skar, Olsson, & Soderberg, 2011; LaChapelle, Lavoie& Boudreau, 2008; Soderberg & Lundman, 2001).

To summarize, the literature shows that despite extensive knowledgeabout living with FM, little is known about the experience of feeling well in

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women with FM. Knowledge about meanings of feeling well is a prerequisitefor providing the support women with FM need to experience feeling well.Therefore, our aim with this study was to elucidate meanings of feeling wellfor women with FM.

METHOD

Participants and Procedure

Thirteen women diagnosed with FM participated in this study. Fifteen womenfrom a previous study (Juuso et al., 2011) agreed to also participate in thisstudy. The first author telephoned the women to make appointments for theinterviews and to give further information about the current study. Two of the15 women were not available and therefore did not participate in this study.

The women ranged in age from 38 to 64 years (MD = 55), had expe-rienced symptoms for 7–38 years (MD = 25), and the lapse since diagnosisranged from 2 to 21 years (MD = 11). Seven women were married, two werecohabitating, and four were single. All had children and three had minors stillliving at home. Three women were employed or looking for work, five wereon sick leave, and three received a state pension and two a disability pension.

Interviews

The first author conducted personal audio-taped telephone interviews us-ing a narrative approach (cf. Mishler, 1986; Sandelowski, 1991). Participantswere asked to talk about when they feel well. Clarifying questions wereasked when needed, for example, “What did you feel then?” and “Can yougive an example?” According to Polit and Beck (2008), telephone interviewsare convenient when researchers have had prior personal contact with therespondents, as was the case in this study. Kvale and Brinkmann (2009) statethat it is convenient because it provides opportunities to interview peoplewho are geographically far away. The interviews lasted between 20 and 61minutes (MD = 44), and all were recorded and transcribed verbatim by thefirst author. Data collection took place in 2010.

Ethical Considerations

The study was approved by the Regional Ethics Review Board. Beforethe interviews, all participants were given verbal and written informationabout the nature of the study. They were reassured that their participationwas voluntary and that they could withdraw from the study at any timewithout giving any explanation. All participants gave their written consentand were guaranteed confidentiality and an anonymous presentation of thefindings.

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Data Analysis

As our aim with this study was to elucidate meanings, we chose aphenomenological–hermeneutic approach inspired by the French philoso-pher Paul Ricoeur (1976) to interpret the data. The method was developedfurther by Lindseth and Norberg (2004) to be applied when researching livedexperiences.

The phenomenological–hermeneutic interpretation is a process withthree phases: the naıve understanding, the structural analysis, and the com-prehensive understanding. We started the interpretation with reading the textseveral times as open-mindedly as possible in order to grasp its meaning as awhole. From this reading we formulated the naıve understanding that guidedthe second phase, the structural analysis. The structural analysis aimed toexplain the text as objectively as possible and to validate the naıve under-standing (Lindseth & Norberg, 2004; Ricoeur, 1976). In the structural analysisthe text was divided into meaning units guided by the aim of the study. Themeaning units were then condensed into formulated meaning units that weresorted into subthemes based on similarities and differences. The subthemeswere then abstracted into one major theme. In order to achieve validation,the subthemes and the theme were compared with the naıve understanding.The final phase, comprehensive understanding was developed from andsupported by the naıve reading, the structural analysis, our preunderstand-ing, and the literature (cf. Lindseth & Norberg, 2004; Ricoeur, 1976).

FINDINGS

Naıve Understanding

Feeling well for women with FM seemed to mean managing everyday lifeindependently and being able to plan their day to suit their own pace.Appreciating the small things in life and having an inner calm seemed tobe important to feeling well for women with FM. For the sake of feelingwell these women had to preserve their energy and protect themselves fromoutside demands. In an everyday life accompanied by pain and fatigue,feeling well did not occur without a conscious act, but they seemed togain the courage to dare to enjoy the good moments. Memories from pastmoments of well-being lightened moments when the pain threatened totake over, and preserving the joy of living seemed important for feelingwell. Caring for others and being cared for, believed in, and accepted alsoseemed to be important part for feeling well for women with FM.

Structural Analysis

The structural analysis resulted in one major theme with four subthemes.The theme and subthemes are presented below with quotations from theinterview texts.

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Having Strength to Be Involved

Being in control. The women with FM said that feeling well was some-thing that did not occur by itself; instead, they had to work on it. They didwhatever they had to do to feel well and chose not to ponder much overtheir situation. It was important for them not to let the illness take over or tofall into a state of self-pity, because, “it was so much easier to start feelingbad than to start feeling well.” When they were feeling gloomy, the womencontacted their friends to get help keep their thoughts on other things. Otherways of brightening up their days included walking outdoors, reading, knit-ting, and meditating. The women felt well by forcing themselves to be activedespite their pain and fatigue:

I try to do things, it isn’t much, but I try to do something anyhow. Iwater the flowers or dust. It doesn’t ease the pain, but lightens my mood,because if you just sit down, you start to think and feel, but if you try todo things, it’s easier.

You have to find joy in the small things, you have to emphasize things youaccomplished, like that your children are talented and that you manageto take care of your home. Yes, I think I always try to have something tolook forward to, not so much but always something.

Having power. The women with FM stated that they felt well whenthey could get up in the morning and have the strength to be independentduring the day. Such moments occurred when the women could do ordinarychores such as taking care of their children, cooking dinner, or cleaning thehome. When they could manage these, they experienced an inner calmand feelings of happiness. The women said that when their strength wassufficient for them to go out shopping or attend a concert or a sports event,they experienced joy. This gave them a good feeling throughout their bodyand soul, which made them feel almost as they did when they were healthy.In the spring and summer, women with FM described themselves as havingmore strength and therefore they could do more in their daily lives. Theywere not free from pain, but they felt lighter in their minds, were more alert,and felt well, which they attributed to light and warm weather. Being ableto be more active and to have the strength to socialize was described asincreasing their vitality:

Sometimes it can be so little actually that makes you feel well, becauseif you have good days or just have the strength to . . . maybe manage toclean a cupboard or wash some clothes, and then you feel that you haveaccomplished a lot, which is fun.

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I’ve more strength to do things [during the summer], yes, I’ve noticed thatI do more things, go on picnics, ride my bike, meet people, and I wantto join in different events. I’m more like myself from the past. I’ve pain,but it’s another kind of pain, and during the summer it’s like it becomesmore enjoyable to do things.

The women with FM who were working said that when they had the powerto go to work they felt satisfied and well. Their work was an important part oftheir daily life, and even if they experienced more tiredness and exhaustionafter a day at work, they described it as being stimulating, important, andmeaningful: “I really like my work a lot; I wouldn’t want to be without it,because I experience it as stimulating. It’s a big part in my life.”

Finding one’s own pace. The women with FM stated that they feltwell when they could do things without hurry or haste. Avoiding stressfulsituations and adjusting chores to their bodily ability made them feel welldespite pain and fatigue. During the years of illness, they came to realizethat the worst periods would be relieved by better periods. This insight madethem less unhappy and enabled them to enjoy feeling well despite the fearof backlashes. To encourage themselves, they tried to think positively andlearned to prioritize and take one day at a time. These were ways of savingenergy and meant that they could feel well for a longer time. To be satisfiedwith themselves and to do things for themselves was described as importantfor being able to discount demands from others and from themselves thatdecreased their possibilities of feeling well. Previous experiences of feelingwell were used as memories during times of increased pain and fatigue,which was described by women with FM as a way of keeping their moodpositive:

I’ve learned that I can’t do everything like before, like when I was healthyI started to clean and dust and wash clothes and things like that and didit while I felt well and then I got this terrible backlash. I don’t do thatanymore because now when I feel well I divide up the daily chores. Itry to slow myself down so I can continue to feel well for several daysinstead of just one day.

I’ve had to slow down my whole life. I’ve learned to say no. It doesn’tmatter if I haven’t done the dishes today, the kids got their dinner, andwhen I get this insight, I can be calmer, but then I have to be undisturbedand alone.

Feelings of belonging. Women with FM described how being acknowl-edged as they were and listened to made them feel well. The women at-tributed great importance to family and friends as a source of well-beingand the invaluable support that made them feel secure, loved, and happy.Being needed by children and grandchildren gave meaning to their lives,

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and the women described themselves as being lucky to have such support-ive families. When the family members felt well, women with FM describedthemselves as also feeling well:

Above all it’s my family that makes me feel well. Just that I have them andcan discuss things with them; we have a really close relationship. I cando things without any demands from them and that our grandchildrenwant me to enjoy them in different activities feels really fun.

Friendship and good social relations were described as important for feelingwell. The single women without families or who lacked support from theirfamilies described their relationships with other people as important. Tohelp and support others, to meet friends in associations and to meet otherswith similar experiences gave rise to feelings of understanding and of beingworthy. To have fun and to laugh together was described as relaxing, and thetogetherness with others was a way of breaking the isolation that threatenedthe women’s daily lives:

I feel well when I’m with friends at the association. I really have to saythat it’s an oasis, it has been really good these years I’ve joined, and it’ssuch fun because we all have pains and aches of different kinds andwe never sit and complain. Instead, we have fun together and these aretimes when I really feel well.

COMPREHENSIVE UNDERSTANDING AND REFLECTIONS

The researchers of this study suggest that meanings of feeling well for womenwith FM are to have strength to be involved. According to Gadamer (1996),health does not present itself to us; instead, it is disclosed in a feeling ofwell-being. He also said that health is not just a feeling in oneself but acondition of being involved, active, and engaged in one’s everyday tasks.For women with FM, it is possible to feel well despite living with illness.

The women with FM said that feeling well was not something that oc-curred by itself; instead, it demanded engagement. The women did whateverwas necessary to feel well. Todres and Galvin (2010) drew on Heidegger’sphilosophy when they showed that the possibility of well-being lies on theunity of dwelling and mobility, meaning the adventure of being called intoexistential possibilities as well as being at home with what has been given.From this it can be understood that the women with FM moved forward andgained willpower from their engagement in daily life and through the loveof their children, who also helped them to maintain control over the illness.According to Todres and Galvin (2010), the energized flow of movementforward offers a possible variation on well-being. According to Gadamer(1996), health manifests itself as a general feeling of well-being, meaning

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that we are open to new things and forgetful of ourselves. It is the rhythm oflife and, according to Dahlberg, Todres, and Galvin (2009), health is a vitalrhythmic movement where the person is able to carry on their minor andmajor life projects.

The women with FM said that they felt well when they had the strengthto do ordinary chores independently. To sometimes have enough strengthto be more socially active was described as giving them a good feelingthroughout their body and made them feel as if they were healthy. Accordingto Gadamer (1996), health is a condition of being active and experiencingrewarding engagement with things that matter in life. Register (1989) statesthat doing gives us a sense of meaning that mere existence cannot convey.When chronic illness intervenes in people’s lives, they keep doing thingsdespite and because of the illness. Frankl (1993) states that people who havefound meaning in life can feel happiness. He also said that life always hasa meaning, but it has to be found through experiencing something (nature,culture) or someone (love), for example. For women with FM, the light andwarm summer weather strengthened them and enabled them to enjoy lifemore fully. The ability to be more active was described as strengthening theirvitality. Gadamer (1996) states that well-being is being able to say that onefeels well, meaning that a person is able to be completely involved in thingsthat he or she wants to do. Women with FM who had a job or were on workpractice described their work as meaningful, something that made them feelwell. Charmaz (2006) states that for people with chronic illness, work canbe an indicator for health and can become a part of their self-concept. To beable to participate in a favorite activity also nourishes and validates the self.

The women with FM said that they felt well when they were able to dothings at their own pace and avoid stressful situations. Through the yearsthey had came to terms with the pattern of the illness that enabled themto feel well despite periods of increased pain. By taking one day at a time,they saved energy and could feel well for longer periods. According toGadamer (1996), health is concealed harmony where the person in goodhealth can be absorbed in what he or she is doing but also be aware ofhow easily this harmony can be disrupted. Dahlberg and colleagues (2009)refer to Heidegger’s letting-be-ness and discuss how the person welcomesthe present moment, including coming to terms with what has been andwhat will be in the future. This means that the person can find peace andstillness in the present moment, and this peace allows the possibility of well-being. According to Frankl (1993), to have been is the highest form of being,which means that the possibilities in life are concealed and saved when theybecome realities. Past realities are resources in the present; therefore, forwomen with FM, past good moments were a resource for well-being.

The women with FM felt well when they were listened to and acknowl-edged as they are. Buber (1997) stated that all human beings need to beconfirmed in their existence. They want to be a part of other people’s lives

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and need confirmation just because they are human beings. Confirmation al-lows us to be and grow and it implies a mutual acceptance and affirmation.Gadamer (1996) noted that it is important to recognize the other in theirotherness, which means to address the person without forcing oneself onthem. The women with FM felt needed by their family and described feel-ing well when the family felt well. This is in line with Olsson et al. (2010),who showed that the closeness and deep understanding in the family madewomen with multiple sclerosis (MS) feel well. Similarly, Jumisko et al. (2009)showed that belonging to a family where everyone cares for each other is agreat source of happiness and well-being for persons with a traumatic braininjury (TBI). According to Buber (1990), a fulfilled relation is when I makethe other present to me. Then understanding and an authentic dialogue ispossible.

Feeling well for women with FM was also strongly connected to rela-tions to other people. To be able to help and support others and to meetothers with similar experiences made the women feel well. Togethernessand belonging helped them to break the threatening isolation. According toGadamer (1996), health is being involved and being together with others.For Frank (2002), the power of recognition to reduce suffering cannot beexplained but seems to be fundamental to our humanity. Togetherness andbelonging as a source of feeling well can also be seen as patterns in relationto people’s experiences of living with other chronic illnesses. According toOlsson et al. (2010) women with MS felt valuable through being able tosupport others in need, and Jumisko et al. (2009) showed that feeling wellfor women with TBI meant being important, doing something useful andcontributing to other people’s feelings of well-being. According to Frankl(1993), the meaning in life can be found through satisfying demands that areexperienced as obligations, such as meeting another person’s needs.

LIMITATIONS AND STRENGTHS

Throughout the study process we kept ourselves aware of our preunder-standing as nurses and nursing researchers. We did not take anything forgranted but checked our understanding during the interviews by askingprobing questions. We interpreted the interview text as open-mindedly aspossible. In relation to our preunderstanding, we broadened our awarenessthrough critical discussions with peers and by studying relevant literature (cf.Lindseth & Norberg, 2004). According to Dahlberg, Dahlberg, and Nystrom(2008), our preunderstanding can be restrained to prevent an uncontrol-lable effect on our understanding. When conducting this study, we con-sistently tried to keep our preunderstandings in check (cf. Dahlberg et al.,2008). The literature chosen aimed to illuminate the interview text, and theinterview texts aimed to illuminate the literature (cf. Lindseth & Norberg,

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2004). The interpretation presented in this study is the one we found mostprobable. According to Ricoeur (1976), “an interpretation must not onlybe probable, but more probable than another interpretation” (p. 79). Thefindings in this study represent one way of understanding the meanings offeeling well for women with FM. The findings cannot be generalized butcan be transferred to similar situations or participants (Lindseth & Norberg,2004).

Conclusions and Clinical Implications

Based on the findings in this study, we conclude that it is possible for womenwith FM to feel well despite living with illness. For them, feeling well meanthaving strength to be involved. By listening and responding to women’sexperiences of feeling well, nurses and health care professionals can bea part of the power that enables well-being. We suggest that the findingsin this study can help nurses and health care professionals increase theirunderstanding and awareness of the possibilities of feeling well. It would bea good starting point to meet women with FM from their perspective andtheir needs.

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